The Latest

We just spoke with our doctors about Cutter’s case. We have always known that Cutter has a small brain malformation. When Cutter first started having seizures we thought that the brain malformation was called encephalomalacia, which is loss of brain tissue. However, due to high resolution imaging on his newest MRI we now know that the brain malformation is called focal cortical dysplasia, which mean more brain tissue and not less. (The spot on his brain has not always been something that is easily seen because of his brain still developing. So, his MRI in February is considered “old.” As his brain continues to grow that spot will become more noticeable and easier to see with an MRI.) What FCD means is that neurons in an area of the brain failed to migrate in the proper formation during pregnancy. Occasionally neurons will develop that are larger than normal in certain areas. This causes the signals sent through the neurons in these areas to misfire, which sends an incorrect signal. It is commonly found near the cerebral cortex and is associated with seizures and may be associated with some level of developmental delay(s). ( I have to quote Wikipedia here because this is the best definition I have found!)
So, what does this mean for Cutter right now? Well, for now they are going to up his current medication to see if this helps any. He is currently on two different medications (Keppra and Zonegran). We will follow up with Dr. Huffstutter to see what kind of timeline he would like to use when giving the new dosage. If Cutter is still even having just a few seizures we are going to try a new medication. We will give it adequate time to work.
If the seizures still persist then we will try other options. Other options include a special diet (ketogenic) which is a high fat diet. (We are actually going to speak today to a dietician just in case we have to go that route.) There is also something called Vagus Nerve Stimulation. (Thank you again Wikipedia for the following definition.) VNS uses an implanted stimulator that sends electric impulses to the left vagus nerve in the neck via a lead wire implanted under the skin. This would be tricky, though, because he is so little. We are going to meet with a neurosurgeon today to talk about that, as well as possibly surgery on that area if we need to go in that direction. (That would be a last resort, of course.)
Right now the doctors are concerned about the left side of his body. It is a lot weaker than the rest side. They aren’t sure if this is because of damage caused by seizures or if it caused by the malformation. Either way, we are going to work with some therapists on this. I have already talked with Allyson Greene, who is being wonderful enough to help me find people to help us out with this! 
We get to go home sometime soon. I am guessing tomorrow morning, though it hasn’t been officially said by anyone. There is no need to keep Cutter here any longer to run tests or do any other observations because they clearly can see what the underlying problem is. Thank Goodness! If they did not know the cause of the seizures he would have to go through all kinds of stuff. Even though we don’t love the diagnosis, it could be so much worse! We are so thankful that this problem is as small as it is. Though we still have a long road ahead of us we are hopeful that the medication will be the best solution and will work.
Thank you for all of your prayers and support! We will continue to keep everyone updated!

Keep praying!